Policy to Practice: Follow-up with Referral Sources—What Can Be Shared?

Policy to Practice: Follow-up with Referral Sources—What Can Be Shared?

There’s that recurring “reality check” question…The one about what, if any information can be shared back with a referral source particularly when an EI program has been unable to locate a family, complete an eligibility evaluation or when parents have declined services. Some referral sources follow-up directly with a program (vs. a parent) with inquiries about the “status” of their referral.

Two important regulatory provisions should be considered: confidentiality and child find.

Confidentiality: The 2011 Part C regulations clarified that the confidentiality requirements attach once an infant or toddler is referred to an EI program. This would mean a program would need to obtain consent for the disclosure of information related to the status of the referral or the outcome of the eligibility determination. (Note: there are some exceptions to disclosures without consent which include, but are not limited to disclosures between participating agencies, LEA notification without an no opt-out, disclosures to DCF during an open investigation).

Child Find: The amended regulations also strengthened the language related to the development of a state’s comprehensive child find system (aka “outreach”) including “rigorous standards for appropriately identifying infants and toddlers” (34 CFR 303.302(a)(3)) and that specific higher risk populations are “identified, located and evaluated”. The regulations require a referral source to make a referral within 7 days of identifying an infant or toddler suspected of having a disability, but removed the language that the EI program needed to inform the referral source of the outcome of the referral with parental consent.

Most programs have some sort of formal or informal practice of notifying a referral source of the outcome of a referral.

A program may contact a referral source (without parental consent) to confirm that the contact info provided (parent/child’s name, address, phone number) is accurate when a family is not responsive to the program’s outreach or cannot be located. This would not be considered a violation of the Part C confidentiality provisions because the program is only inquiring about the accuracy of information already provided by the referral source. But, it might be enough to suggest that some additional follow-up by the referral source with the family is needed.

If your program typically requests consent from parents to notify referral sources of the outcome/status of the referral, you could inform the referral source in advance or when they make the referral that if they do not hear back from your program, it was because consent was not obtained (for whatever reason). Without consent, you are only able to confirm the contact information for the child/parent. Without consent, you may not identify barriers or activities (intake/eligibility evaluation) that have/have not occurred.

When a parent/guardian self-refers on the “recommendation of” their pediatrician, child care provider, etc. always remember for purposes of confidentiality the parent is the referral source – not the person who recommends a referral. In this situation, a parent would need to provide consent for the disclosure of information related to the status/outcome of the referral.

If you have additional questions, please be in touch with your Regional Specialist or Mary Dennehy-Colorusso.


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